Hello, newly diagnosed MDS

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tjh
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Joined: 05 Aug 2014 22:39
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Hello, newly diagnosed MDS

Postby tjh » 07 Aug 2014 14:47

Hi,
I hope that it's alright to vent out here, not living in the UK. I live in Norway and here there are no online support forums for MDS. Actually I have not recieved any written information from the hospital. I was told that we were so few in Norway and that I could perhaps contact the leukemia group for support (talk to someone about my feelings etc.) , even though I don't have leukemia! There is a Danish forum but I can see problems arising with the language.

I am 68 (F) and was diagnosed with MDS in February 2014 and found out in March that I was RAEB 1 (2) with 10% blasts, low WBC . low on neutrophiles - 0.5, The others were all normal.

I had complained to my GP that my ankles were swollen quite often and that I was short of breath.

My neutrophile results up to now have been 0.4 and 0.5 . I hope that the test next week is holding at 0.5 since I am off to Paris for a weekl. There will be a new BMB probably in September and I must admit I'm scared about the excess blast procent increasing and progressing to AML.

Just knowing that one is not alone with MDS is comforting.

Thanks
Tiiu
68 (F) MDS RAEB 1(2) in 2014 : March - Blasts 10%. AML Feb 2015
MollyP
Posts: 73
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Hello, newly diagnosed MDS

Postby MollyP » 12 Aug 2014 08:35

My husband has MDS, the lack of initial information and the expected life expectancy left us dazzled with fear. 18 months on we live with it it doesn't live with us, we acknowledge and deal with it when we have to but are fortunate enough to be able to ignore it and get on with life too.
This support site is a great place for support and useful information about this very rare blood cancer. We are now used to doctors asking us about it, as they have not come across it.
I hope you enjoyed Paris And were able to put it all to the back of your mind for a while, and I am sure no one here minds where you live but that you can at least talk to those who understand.
Best wishes
Molly
Xxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: Hello, newly diagnosed MDS

Postby sophie » 13 Aug 2014 16:22

tjh wrote:Hi,
I hope that it's alright to vent out here, not living in the UK. I live in Norway and here there are no online support forums for MDS. Actually I have not recieved any written information from the hospital. I was told that we were so few in Norway and that I could perhaps contact the leukemia group for support (talk to someone about my feelings etc.) , even though I don't have leukemia! There is a Danish forum but I can see problems arising with the language.

I am 68 (F) and was diagnosed with MDS in February 2014 and found out in March that I was RAEB 1 (2) with 10% blasts, low WBC . low on neutrophiles - 0.5, The others were all normal.

Just knowing that one is not alone with MDS is comforting.

Thanks
Tiiu


Dear Tiiu,
you are very welcome here - and we are always glad to hear from others in different countries. We do have a few users from New Zealand as well, and some living in France.
Regarding setting up connections in your own country - please do definitely try the Danish group - led by Niels Jensen:
http://dkpsg.mds-and-you.info/home
Niels speaks excellent English and can also help with possibly setting up something in your own country - at least via the internet.
Also contact the MDS Nordic group http://www.nmds.org/. They are mainly physicians and nurses - but will definitely help to set up something for Norway - if you wish to do so.
I know the nordic MDS specialist nurses are very keen to get involved in patient support.

Lastly - do keep an eye out on the new MDS Alliance website.
This is the new umbrella group for all national MDS support groups - of which MDS UK is a founding member:
http://www.mds-alliance.org/
If you did want to set up a small virtual group in Norway - with the help of other patients and staff - please do let us know.
MDS Alliance will provide support, advice, contacts etc.
But for a start do say hi to Niels Jensen please - I know he will respond and will assist where he can.
Pass on my warmest regards to him - and his family as well.

Please feel free to email me if you need anything else.
Kind regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
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Re: Hello, newly diagnosed MDS

Postby janbev » 23 Aug 2014 15:39

Kjaere Tiiu,
Min navn er Janet J eg haper at du foler meg bedre om MDS. Min norske er ikke godt. It is 40 years since I last spoke or wrote Norske. My husband (he is 67) was diagnosed in July 13 with MDS RCMD and is on watch and wait, it is quite a rare condition and the most research and information seems to be on the american websites. Very few medical people know anything of MDS and we found it is a learning situation not just for the patient but also for the GP. Our GP says we probably know more about it than he does! Leukemia care in the UK and Cancer research will give you information and support and I am sure Norway has similar organisations - MDS is classified as a blood cancer so most if not all cancer support organisations will give you support if needed. As well as this site have a look at MDS Beacon which has lots of information not just from Europe but worldwide and also lots of articles by patients from around the world. There is also a MDS beyond Limits website.
The only information my husband was given at first was a small booklet on leukemia in which the consultant had marked one paragraph which she said applied to my husband and that she would see him in 3 months! You do tend to come out feeling as if someone had just punched you in the stomach then you go to see your GP for help and information and they tell you its really rare I have never come across it so I will have to research it and get back to you. Finding first this site and then the others has helped to clarify things for us. It has meant some changes to our lifestyle and has increased the cost of going abroad on holiday as he is also diabetic and has had 2 heart attacks travel insurance generally costs around £300 a week - it also costs family members more as normal travel insurance will not cover them if their holiday is cancelled or cut short because of Bev's MDS - only a few insurance companies will cover MDS and then at a price. Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
tjh
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Joined: 05 Aug 2014 22:39
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Re: Hello, newly diagnosed MDS

Postby tjh » 31 Aug 2014 20:57

Thank you Molly, Sophie and Janet for answering!

I have been recouperating after my trip to Paris :D I wonder at what point you have to ask for special travel insurance? Since I am on Watch and Wait and have no treatment yet, I assumed that ordinary insturance could be used? I was told to contact a hospital if I should get a fever in Paris. I managed to not think that much about MDS but due to the tiredness we had to cut short some walking tours, but I slept very well in Paris.

Janet - Jeg har det ganske bra - problemet akkurat nå er mentalt. I had so many questions to my hospital doctor and instead of having a face to face chance to discuss, he called me to give me the results- stable - low neutrophiles The Norwegian cancer foundation has very little info on MDS on their site, other than it exsists. I have not contacted them yet.

Sophie - thank you for all of the links - I actually found now a small booklet in Norwegian on the Nordic site. Now why couln't my doctor have told me about that ?...... I am english speaking so the english sites have been ok, but inorder to talk and discuss with Nowegians it is helpful to have the terminology in Norwegian.

I have been trawling MDS pages and forums and there are very few with my type -" only low neutrophiles" no abnormalities in DNA or other cells or platelettes. Actually I have not found anybody! I guess I am a pioneer :lol: But the fear and uncertainty is there for all of us. Thanks for the warm thoughts

Tiiu
68 (F) MDS RAEB 1(2) in 2014 : March - Blasts 10%. AML Feb 2015
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
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Re: Hello, newly diagnosed MDS

Postby janbev » 05 Sep 2014 15:40

Kjaere Tiiu

In the UK (I do not know about Norway) normal travel insurance only covers people who have certain medical conditions but will not cover you or your family if you have any other medical condition. We have to declare any non-standard medical conditions and most of the normal travel insurance companies do not cover MDS so we have to go to specialist companies. The Leukaemia support charities in Norway will be able to give you a list of companies to speak to. On this forum Sophie has given advice on Travel insurance under the heading of Travel Insurance and if you cannot find anyone to cover you in Norway perhaps one of these companies may be able to help. Typically they ask if your Red Blood cells are above 10 and the white blood cells are under or over 4 – Bev’s white blood cells are under 4 and with his heart attacks and diabetes a one week holiday in Crete costs us around £320 to cover Bev, myself and our daughter just for the travel insurance whereas if there were no health problems it would cost around £15 for the 3 of us. We are going to Crete next week and our doctor has given Bev a course of anti biotics to take with us in case he gets an infection.
Bev always carries a small bottle of hand sanitizer with him for use if he has to use public toilets and anywhere where lots of people are likely to use handrails, door handles etc. He still works 3 days a week and the university he works for has moved him into research so that he does not come into contact with a lot of students, no one else is allowed to use his computer keyboard and his work area is cleaned everyday with anti-bacterial cleaners. He started to take multi vitamin tablets 6 months ago after one doctor recommended that he should take them as the immune system needs extra selenium and zinc to help fight the infections MDS patients are prone to get. It does seem to help as he has not had any infection that needed anti biotics since.
I do not check the MDS forum regularly but if you would like someone to listen to your worries or just to be there for you send Sophie at MDS an email asking her for my contact details - I will send her an email to say she may give you my email and phone contact. I do check emails daily even on holiday.
Janet (Nye)
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
red
Posts: 67
Joined: 22 May 2013 14:25
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Re: Hello, newly diagnosed MDS

Postby red » 05 Sep 2014 23:27

Hi,
I went to Crete last year and I also took anti bacterial wipes to clean the handles, taps and flush etc. I only drank bottled water and avoided all salads and only ate cooked meals out. I also took dehydrating saches just in case. I was particularly careful when using the toilets on the plane.my GP gave me antibiotics just in case and thankfully I did not need them.
I had a lovely weeks holiday.
I hope you have a good time.
All the best,
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
Steve T
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Joined: 24 Nov 2014 15:04
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Re: Hello, newly diagnosed MDS

Postby Steve T » 10 Dec 2014 11:11

Hi , my 23 year old daughter has just been diagnosed with MDS RCMD with T-LGL, she has been on Ciclosporin but is not responding. She has now been offered Anti-thymocyte Globulin or Cyclophosphamide.
Does anyone have any experiences of these 2 treatments?
We attended a Patients Forum in Oxford, however, with the greatest respect, my daughter was some 40 years younger than the other patients, we have been in touch with the Youth Cancer Trust and are meeting with them next week at Guys Hospital,
Are there any 'young' MDS suffers out there that may be able to share their experiences?
Thanks
ClaudiaRichards
Posts: 13
Joined: 20 Sep 2012 19:11
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Re: Hello, newly diagnosed MDS

Postby ClaudiaRichards » 11 Dec 2014 12:55

Hi Steve

I'm afraid I don't have any experience of the two treatments you mentioned in your post. However, as I was at the meeting in Oxford you attended, I wanted to reassure you that after the meeting I got in touch with Monika, the Project Worker in the MDS UK office, specifically regarding your daughter, as it was clear to me at the meeting that some of what was discussed was not particularly helpful or relevant to her and that she would benefit more from having contact with people of a similar age.

I saw Monika yesterday at the Cancer52 event at the Houses of Parliament and I understood from her that she either has already, or is intending to, put your daughter in touch with a young person who works for CLIC Sargent and is herself a cancer survivor.

I am certain there are younger MDS patients in the Oxford area - and we have tried to reach them and encourage them to come along to meetings - but so far we have had no success (it may simply be that they are working and are unable to attend meetings on weekdays).

Yes, your daughter is very young to be facing this, but she is not alone, and I feel sure that she will find others to offer her appropriate support before too long, hopefully as a result of your meeting next week with the Youth Cancer Trust.

Best wishes to you and her
Claudia

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